Transcript Problems of Alzheimer’s Disease in the Arab World

Problems of Alzheimer’s
Disease in the Arab World
Dr. Ashraf Al-Kurdi FRCP(London), FRCP (G)
Regional and 21st International Conference of
Alzheimer's Disease 28th Sep -1st Oct 2005
Istanbul Turkey
1
The Arab World
22 countries
common language
Common religion
2
Jordan
Population Estimates by size, age group
)2025 ,2020 ,2015 ,2010 ,2005 ,2000(
Years
)14 -0(
)24 -15(
)44 -25(
Total
%
Total
%
Total
%
2000
2077
41.6
1028
20.6
1295
26.0
2005
2037
37.1
1296
23.6
1329
24.2
2010
2320
37.1
1476
23.6
1513
24.2
2015
2629
37.1
1672
23.6
1715
24.2
2020
2964
37.1
1885
23.6
1933
24.2
2025
3079
37.1
1959
23.6
2009
24.2
3
Jordan
Population Estimates by size, age group
)2025 ,2020 ,2015 ,2010 ,2005 ,2000(
Years
2000
2005
2010
2015
2020
2025
)59 -45(
Total %
371
494
563
638
719
747
7.4
9.0
9.0
9.0
9.0
9.0
)+60(
Total %
219
335
381
432
487
506
4.4
6.1
6.1
6.1
6.1
6.1
All Age Groups
Total Male Fem
ale
4990 2399 2591
5491 2661 2830
6253 3030 3223
7086 3434 3653
7989 3871 4118
8300 4022 4278
4
Prevalence of dementia:
The Framingham Study
237.5
250
200
150
105.3
100
50
3.5
9.0
61-64
65-69
17.9
35.8
70-74
75-79
0
80-84
85-93
5
A few short cases to help
illustrate the impact of AD on
the community
6
Case 1
A well-off elderly man
suffering from
Alzheimer’s Disease
was a victim of
embezzlement because
of his loss of cognitive
and judgment abilities
by ill-doers – although
the amount embezzled
was 1,5 million USD
his family never
reported the case to
the police because of
social stigma and
shame
7
Case 2
An elderly patient with
dementia was taken
from his hospital bed by
his son to write off part
of his land- although he
was not aware of his
decision
Lack of regulatory
and legislative
frameworks for
these patients
8
Case 3
Attempting to get a
permanent helper for
her mother (an AD
sufferer) with the aid of
the social welfare
Department, the woman
was denied any
assistance based on the
fact that her mother’s
physical functioning was
relatively intact
This shows the
lack of awareness
among
governmental
bodies.
9
Case 4
A patient suffering from
AD and Parkinson’s
disease was robbed of
his keys that hung on
the side of his trousershis safe was cleaned
out and he was left with
feelings of remorse
quality of life and
security
10
The Challenge
The Arab World is currently aging as the
rest of the developing world.
However, unlike the developed world, this
region still does not have the resources or
tools to face the socioeconomic and
medical needs of an aging population
11
A perspective on the action
Devise a set of recommendations on
actions that must be taken by the medical
community and governments to be better
prepared for the future
12
Challenges in AD today:
Lack of Awareness
Challenges with Diagnosis and
management
Availability of Nursing homes and /or Day
Care Centers
Research work and funds
Genetics and Genetic counseling
Environment
13
Challenges in AD today:
Lack of Awareness
Challenges with Diagnosis and
management
Availability of Nursing homes and /or Day
Care Centers
Research work and funds
Genetics and Genetic counseling
Environment
14
Lack of Awareness:
The lack of awareness extends to governmental
bodies and the medical community.
Only recently we have had small group initiatives
from within the care-giver and medical
community to establish awareness on
Alzheimer’s disease as a primary objective of
these newly formed organizations.
15
AD Groups and Awareness
We currently have associations in Egypt,
Lebanon, Tunisia, Jordan, Saudi Arabia
and Morocco with the rest of the countries
to follow
16
Lack of Data and national
Registries
Unfortunately to date, we have no national
registries or official statistics on the
prevalence of Alzheimer’s Disease in the
Arab World
17
The condition is under-diagnosed
It is fair to conclude that the number of
reported cases are far less than the actual
existing patients.
This indicates that the condition is under
diagnosed.
18
From our Practices:
The majority of cases present in the later
stages of the disease while prognosis is
worse and the benefit of drug therapy is
limited.
19
Lack of Awareness:
Our societies consider memory loss as
part of the normal aging process and this
is largest hurdle to overcome to ensure
proper management of the disease.
20
Factors affecting awareness
Factors contributing to the current
awareness challenges are the high level of
illiteracy in the region.
This a point of caution when reading into
recently published data on small village
populations as this will magnify the
existence of AD and should be looked at in
context and back-drop of the literacy level.
21
Challenges in AD today:
Lack of Awareness
Challenges with Diagnosis and
management
Availability of Nursing homes and /or Day
Care Centers
Research work and funds
Genetics and Genetic counseling
Environment
22
Challenges with Diagnosis
The three major hurdles we face today in
diagnosis:
lack of validated psychometric tests for
AD
lack of Inter-disciplinary teams for
differential diagnosis of patients
Co-morbidity
23
Lack of validated psychometric
tests for AD
There is a burning need for validated
psychometric testing in the Arabic language that
will be prepared in abidance with our cultural
needs and differences.
It is highly recommended to set the completion
of these test as a primary goal for our regional
initiatives
Establishing cross regional collaboration and
team work, as well as sharing best practice in
our region
24
Lack of Inter-disciplinary teams
for differential diagnosis of patients
The need to form inter-disciplinary teams
(Neurologist, Psychologist, geriatricians,
internists, family doctors,
neuropsychologist, occupational
therapists, physiotherapists, nurses and
volunteers/care givers) is evident if we
plan to manage these patients on the short
and long run.
25
Co-morbidity
Co-morbidity associated with Diabetes
/hypertension, and CHD (Coronary Heart
Disease) Lipid- disorders and thyroid
Dysfunction etc…
in fact our region has one of the highest
prevalence rate of Diabetes of about 30%3, this
creates issues of understanding the case and
properly diagnosing the condition.
26
Challenges in management
Availability of AD drug therapy
some acetyl cholinesterase inhibitors and
mementine are available in some of our
countries (Jordan, Lebanon, Saudi Arabia, UAE ,
Kuwait) they are still not available in others.
The medical societies must build guidelines on
when to start treatment with these drugs and
when to stop, this can be provided by joint
committees from the larger centers active in this
field in the Arab World.
27
Challenges in management
The question that poses itself regarding therapy
is cost
we anticipate that this will grow as our
population’s age and a plan needs to be set in
motion to ensure that patients receive their
medications at an acceptable price through
government subsidy or involvement of charitable
organizations in co-payment
28
Challenges in AD today:
Lack of Awareness
Challenges with Diagnosis and
management
Availability of Nursing homes and /or Day
Care Centers
Research work and funds
Genetics and Genetic counseling
Environment
29
Availability of Nursing homes and
/or Day Care Centers
The Arab world social matrix is fortunately
still a familial unit that ensures the wellbeing and care for the elderly
However…
there is room for improvement in the current
existent nursing homes, and in the daycare support for these patients.
30
Availability of Nursing homes and
/or Day Care Centers
This is key to ascertain mental stimulation
and some form of appropriate re-creational
programs that will ensure these patients
do not lose the limited functioning that they
can exercise in their lives.
31
Availability of Nursing homes and
/or Day Care Centers
The need for Occupational therapy and
education for the care-givers and
specialized therapists will play an
important role as we proceed in the future
32
Availability of Nursing homes and
/or Day Care Centers
We highlight the need for governmental
involvement and lead in the process of
establishing nursing homes of high
standard, as this today is very needed
especially by the majority of patients that
fall within the category of low
socioeconomic class
33
Challenges in AD today:
Lack of Awareness
Challenges with Diagnosis and
management
Availability of Nursing homes and /or Day
Care Centers
Research work and funds
Genetics and Genetic counseling
Environment
34
Research work and funds:
Lack of Statistics and solid data is one of the key
issues we face in many medical conditions in the
Arab World and this is also applicable to AD.
Unfortunately research in the Arab world is very
limited due to lack of awareness .
Raising funds for the purpose of research is
highly advisable at this stage to obtain proper
data and accordingly a solid base to build for the
future and to run comparative analysis with
global data.
35
Research work and funds:
Reasons for this current situation are:
– the lack of specialized institutions (Governmental or private) to run
properly designed research programs– the educational environment
–The younger generation returning after intensive training in the
developed world return to a heavy load of patients and administrative
work
– Lack of an incentive plan for research and donations to research
(example tax exemptions for major donations).
36
Challenges in AD today:
Lack of Awareness
Challenges with Diagnosis and
management
Availability of Nursing homes and /or Day
Care Centers
Research work and funds
Genetics and Genetic counseling
Environment
37
Genetics and Genetic counseling
The genetics of AD is an important factor
in diagnosis and early predication. Genetic
labs and genetic counseling is still in its
infancy and only in a few countries in our
region.
38
Genetics and Genetic counseling
The two basic type of AD are familial and
sporadic. Familial AD (FAD) is a rare from
of AD, affecting less than 10 percent of AD
patient .
All FAD are early- onset, meaning the
disease develops before age 65 caused
by gene mutation on chromosomes 1,14,
and 21.
39
Genetics and Genetic counseling
Researchers have identified an increased risk of
developing late- onset AD related to the
apolipoprotein E gene found on chromosome
19.
This gene codes for a protein that helps carry
cholesterol in the bloodstream. The APOE gene
comes in several different forms, or alleles but
three occur most frequently: APOE e2, APOE
e3, and e4.
A person with even the most probable genetic
link, APOE4, is estimated to have five time
higher risk of developing Alzheimer’s disease.
40
Genetics and Genetic counseling
Work is advised to evolve genetic testing in the
region hand in hand with genetic counseling for
individuals identified at risk.
People who learn through testing that they have
an increased risk of getting AD may experience
emotional distress and depression about the
future, because there is not yet an effective way
to prevent or cure the disease.
41
Challenges in AD today:
Lack of Awareness
Challenges with Diagnosis and
management
Availability of Nursing homes and /or Day
Care Centers
Research work and funds
Genetics and Genetic counseling
Environment
42
Environment
As with other fields, the Arab world is
facing growing challenges in coupling
environmental development with economic
growth, challenges in the area of water
quality, land degradation and urban /
industrial pollution top the list. Although
work is being done, public access to
environmental information has not
advanced despite the emergence of
NGO’s. 6
43
Environment
It is estimated that the environmental
health burden is about 14% of the total
burden in the region.6 The cause of AD
maybe in our environment-perhaps
something in the air, water or soil.
The following will shed light on the main
global findings of the existing link to the
environment and the disease.
44
Environment
The reduced capacity to synthesize neurotransmitter
observed in the aged population may aggravate the
effect of toxic substances.
It has been suggested that one of the more common
CNS disorders of the elderly, Alzheimer’s disease, may
be linked to aluminum toxicity since elevated levels of
aluminum have been found in autopsied brains of
Alzheimer patients.
45
Air and industrial pollution
Calderon-Garciduenas et aL. indicated in their
paper a link to pathology in individuals exposed
to severe air pollution.
The exposure to severe air pollution is
associated with brain inflammation and αβ 42
accumulation, two causes of neuronal
dysfunction that precede the appearance of
neuritic plaques and neurofibrillary tangles,
hallmarks of Alzheimer disease.
46
Water quality
Increased circulating cholesterol directly
affected by water quality is known to
promote risk of coronary artery disease. It
is now emerging that cholesterol promotes
production and accumulation of amyloid g
(Ag) deposited in the hallmark pathologic
lesion of Alzheimer’s (AD), the senile
plaque.
47
Environment
A better understanding based on the
initiatives of the environmental sectors
needs to establish the relationship of our
environment with the incidence of AD in
the region.
48
The internal environment
Alzheimer Disease may be caused by
something within the body. It could be a
slow virus, an imbalance of chemicals or a
problem with the immune system.
49
A perspective on the action
Devise a set of recommendations on
actions that must be taken by the medical
community and governments to be better
prepared for the future
50
A Set of recommendations for the
AD
Joining Forces of the AD group with a
common agenda that will drive regional
initiatives of increasing awareness and
providing support in our respective
countries
51
A Set of recommendations for the
AD
Epidemiological study in the Arab World: The
Pan Arab of Neurological Diseases should take
up the challenge of creating a Pan Arab
epidemiological study that will drive awareness
and create the needed base for dealing with
governmental bodies.
This will provide solid data to help promote
awareness on the condition and support for
patients in terms of medical management and
social facilities.
52
A Set of recommendations for the
AD
To hold regional meeting to discuss practical
issues like psychometric tests, the role of care
givers, establishment of Day care centers,
recreational programs and to share experiences.
To incorporate parties interested in the disease
area including doctors, care-givers, nurses,
counselors and speech therapist. To also
discuss aspects pertaining to neuro-imaging in
respect to diagnosis and differential diagnosis
and to stress the fact about reversible dementia.
53
A Set of recommendations for the
AD
Make AD groups in each country leverage the
media and lobby with the governmental bodies
to improve the status of the AD sufferer in our
region.
Develop genetic tests that are specialized in the
region hand in hand with genetic counseling.
Laboratory testing and neuro-imaging should be
developed and viewed as pivotal tools in the
process of developing the management of the
disease.
54
A Set of recommendations for the
AD in the region
Develop a drug therapy policy through the
medical societies and relevant governmental
departments for the use of AD drugs and
recommendations as well as formalize a cost
management issue on the long run.
Standardization for future day care/nursing
homes to be established is recommended to
ensure a properly high-standard run home that
will cater for the needs of these patients.
55
A Set of recommendations for the
AD in the region
Activate the role of the Environmental
Sectors (Governmental and NGO’s) to
better understand the role of the
environment in our region and its link with
the incidence of AD. Recommendation for
environmental reform must be in the
context of the incidence of AD and other
diseases
56